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Family Stories

Thank you so much to the SOFT members who have shared their experiences here. 

Lily (mosaic trisomy 18)

lily and dad

Lily. As in the flower, stands for Purity Innocence and Beauty. These words could easily be used to describe our lovely Lily, along with other not so flattering words such as cheeky, messy, stubborn and naughty. As with all “special” babies she has been through so much already in her short life but always manages to find a smile. Our family life simply wouldn't be normal without her.

Simon James (10 Jul 2009: 00.10am – 1.10am)


Finding out I was pregnant was the best news as we had been trying for a year. Like every other pregnancy, we were thrilled that we were going to have our own baby.

Charlotte (26 Nov 2006 - 29 May 07)


In March 2006 we found out I was pregnant. The pregnancy was not planned and came as a total shock to both of us and it was around the eight week mark I began suffering from all day sickness.

Noah (18 Jan 2006 - 5 Jul 2009)

noah photo

Noah was born on the 18th January 2006, 33 weeks and 6 days early. He was born by emergency c section as he wasn't growing. The obstetrician wasn't sure if it was due to the placenta not working but Noah weighed 2lb 14oz and was totally gorgeous, and we were told that they were going to test for chromosomal abnormalities. We didn't think anything of it until it came back that he had Edwards’ Syndrome, trisomy 18. 

Liam (17 Oct 2009 - 9 Nov 2009)

liam best photo

Saturday, 17 October 2009: Birthday Surprises Liam’s sneaky arrival!!! At 1am I started to have Braxton Hicks contractions. 20 minutes later I was on the phone to the labour ward....

Katie (1995 - 2013)

Katy 1

Katie passed away in January 2013. Carole and Mike Bull wrote a very moving account of Katie's life, which was published in the Spring/Summer 2013 members' magazine.